Tag Archives: Autism Acceptance

How To Be A Teenager

The diagnosis of Autism assumed many things my son may not ever be able to do. I felt such a loss when that word was first spoken to me of what the disorder may take away from Ryan emotionally and socially. However, one thing my son has always done is look at me and “speak” to me on another level. As if he’s always tried to tell me, for a long time without words, he would be okay. And one thing I know: he is okay and handling things better than I ever foresaw. Turns out what is perceived as social deficits in this disorder are actually positives in the minefield of at least one frightening area that I have been fearing for years: adolescence.

As Ryan is now a teenager, and I see his friends delving into that murky pool of puberty, I feel more confident about how autism will actually help him navigate the maze.  A few of the multitudes of issues teens juggle with: dating, drugs, peer acceptance, popularity and social media, are for now, working well for him with his traits on the spectrum.

The two teenage aliments, in my mind, that can be taken quickly off the table for Ryan are dating and drugs. I’m pretty confident drugs won’t be an issue for Ryan for a long time. I can barely get him to eat a different type of potato chip, so having someone offer him drugs is almost laughable. He will not ingest anything foreign without complete nuclear force.  The other I’m quick to dismiss is the opposite sex. Not that he won’t experience the desire to take a girl out someday, but right now he isn’t panting around after the girls. Don’t’ get me wrong, he doesn’t hesitate to turn his head at a pretty girl, but the issue of impressing a girl is thankfully, currently off his radar.

Possibly the biggest teenage gift bestowed upon Ryan is he doesn’t care about who is popular or if he fits in. He simply knows who his friends are and that’s enough. Ryan is not self-conscious of his looks or his clothes. What a gift to be innocent of the perception others may have of you, at any age, but especially at this critical time in emotional development. Ryan does know when someone may be mad at him, but he doesn’t worry too long about it.  Where most teenagers would fret for days that a peer was mad and turning people against them.

Not being aware of what others think is also a blessing as he has no interest in social media. He has been the subject of many filtered Snapchats with his sister, but he doesn’t have the burning desire most teenagers do to get their own Twitter or Instagram accounts. While I’m happy to not police him on multiple sites, as I do his sister, I wonder, by not being on social media, is he missing out on his peer’s interactions? This I don’t know, and am okay being grey with for now. I like that he is not being obsessed with how many likes or views, or re-tweets his post received. In a society so dependent on pairing social media to self worth, I’m truly glad he isn’t interested.

Ryan’s ‘devil may care’ attitude about his actions is most apparent in his own form of “stimming”. Ryan scripts or what we call ‘movie talks’ incessantly. When it’s not driving me crazy, and I can appreciate his art, I realize he is quite good at it. He can throw a line from a show at the most appropriate time you don’t even realize he’s quoting a TV show. Case in point: arriving at a store a few weeks ago, a lady walks out carrying a small dog. Ryan promptly and quite loudly, points to the sign on the door “Did you miss the sig? No dogs allowed”. Then he giggles incessantly. The lady was not pleased, but I was, a little. I knew it was from a TV show (“Uncle Grandpa”) but she didn’t. I’m sure she thought he was being a typical, rude teenager. And I liked that thought for a moment too; the typical part anyway. The bottom line is, I’m glad he has no concept that people may look at him when he scripts. I’m glad he’s found a way to bring the outside world into his. If you could see how much joy it brings him, acting out a scene in what I am sure is full HD quality in his mind, you would smile too.

As much as I want him to “fit in” to society, I also love his vigor for saying what is in his head–albeit maybe forty times in row. I adore the fact he has no desire to fit in or be cool and because of that he naturally is cool. Kids are attracted to him because he has a stand-off Arthur Fonzarelli-ness about him–his collar up and all.

Being diagnosed with autism may have foreseen some social issues for Ryan, but as far as I can tell, he’s better off not having some typical teenager feelings, at least during puberty. I think a lot of the worrying I did was for not, he seems to have it all in check and isn’t sweating it. I wish more teenagers could feel the way he seems to: just be who you are and don’t fret about what people think. If more teenagers felt the overwhelming need to act out the dance scene from “Puss and Boots”, while walking the isles at Costco, we all might smile a little more.

 

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Homework

After my last post, I pondered more about my own knowledge of Autism. And initially, I felt proud that I know a lot about Autism. But that’s incorrect. I know a lot about how Autism affects my son. I understand what Autism means to my family and me. So, I took my own recommendation and did the homework assignment to read about Autism Acceptance.

I clicked on an organization, which I am familiar with, ASAN-Autism Self Advocacy Network their mission: “ASAN believes that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens”.

What I was struggling to say in my last post about acceptance, they define beautifully, and I probably should have looked at this prior to sending out my own definition, but alas I jumped the gun.

“Awareness is all about creating a sense of urgency and fear…. Awareness is easy. Acceptance requires actual work. Acceptance comes from a place of understanding… Understanding takes work. Acceptance seeks to meet us where we are, or at least far closer to equitably than awareness does… Awareness says the tragedy is that we exist as we are. Acceptance says that the tragedy would be trying to make us any other way.”

Read that passage again. I’ve read it four times and it gives me chills-kudos to ASAN for nailing it. Acceptance requires actual work. So, that reaffirms to me, we still have a lot to do.

As I read on, I came to a section called “Identity First Language”. For those of you who aren’t familiar with this, it is a raging (and I am not exaggerating that term) debate in the world of Autism. I don’t want to start any riots; I merely want to expose you to the term and to make you aware of the sensitivities to this topic and hopefully take your knowledge and Acceptance one step further.

So, what does Identity First Language mean? Put the person before the disability or condition, (I stole the following from thearc.com) “…and describes what a person has, not who a person is. Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the opportunity to define him/herself.”

Example:

Person with Autism vs. Autistic Person

On the surface, theses statements may seem the same, but the real delineator is the first one suggests a separation of the disorder from the person. But can you separate a person from the disorder? There are so many times, I wonder if I am seeing autism or my son just being a crabby teenager. Or is his autism causing typical teenage stuff to be even more heightened? I can’t completely take Autism out of the equation, but I don’t want it to define him either. Yet, how can I separate him from his own traits that likely come from the disorder? Do you see the dilemma? This is the debate in a nutshell.

So, as you can imagine, this is truly a personal preference for how to refer to someone. And that preference can range wildly even between a parent and a child. I could delve much deeper into this hot topic, but for today, I’ll leave it here. I wanted to introduce the concept to you and hope you do more reading on it. If nothing else, at least, be aware there are individuals who prefer to be addressed differently and you should ask what their preference is: person with autism or autistic person? A real expert on People First Language is Kathie Snow. You can read her one page explanation here regarding all disabilities: Kathie Small

Summing up, I haven’t approached this yet with my son, as we don’t really talk with him about being a Person who has Autism. I have asked if he knows what Autism is and he says yes, but that is usually his response to most things. When I asked specifically for him to define it – he could not. I don’t blame him; it’s a quagmire of a definition. So, for now, I don’t push him, but I do wonder what his preference will be someday: Autistic Person or Person with Autism?

To me, he’s still and always will be just Ryan.

 

 

 

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Autism Month

Note from Me: There has been a long gap in the posts to this blog. My apologies. I’m working on a second book, fiction this time, so I think my brain and daily clock only allow me a certain word count. But since it is Autism Month I felt compelled to share some thoughts.

I’ve spent the last few weeks gearing up for Autism month-which started yesterday (and today is Light it Up Blue – World Autism Day- so hope you put out your blue light bulbs). I’ve been reaching out to my community, schools, libraries, etc., to talk about Autism. It’s something I am passionate about as many of you know, as my son is on the spectrum. If you didn’t know, scroll down farther on the blog and read snippets from the book I wrote about our journey. Or you can order it on Amazon (The e-book is on sale now for World Autism Day). Purchase on Amazon

A few weeks ago I was invited to a Facebook group of “Autism Ambassadors”, who are also reaching out to their communities. I was asked for a quote for an article about Autism Acceptance and it got me thinking more about Autism Awareness month and how it relates to Autism Acceptance. (See link a the bottom for that article) I think we all can agree, the awareness part is sort of ‘been there, done that’. Twelve years ago when my son was diagnosed that wasn’t the case. For those who read my book, I talk about a store employee that didn’t understand what I was saying when I explained my son was autistic, after he had the mother of all tantrums. Her reaction was “Oh, how great”. Clearly she didn’t comprehend the complete melt down my entire life was at that moment, nor what Autism meant. Since then, I think most people are pretty aware of autism.

But, it’s not the aware part I’m focusing on anymore. Acceptance is what I’m after. And it’s seems to be a common theme in the Autism world today. Acceptance comes from knowledge and I plan to teach anywhere I can, starting here.

I’m going to give you some homework today: Go to Google and type ‘Autism Acceptance’ and choose just one of the many links. If you have someone with autism in your life, your story could be much different than those you read about and can broaden your perception. If you work with people on the spectrum, it will hopefully demonstrate how different each child is. Or if you have no one in your life, I guarantee you will learn something.

Then if you will, take any insight you have gained, put it out in the world, in your own way: share an article you read; put a quote on social media; talk with a typically developing child who may not understand it yet-they are going to be the best ambassadors for change. Change can happen but it starts with you. If you can broaden your mind, you can most certainly help to broaden others just by talking about something heard about, but not quite understood.

I thank you for attempting this homework. And if you don’t have time to get on the Google, just click the link below, you will learn quite about from this article. More to come…

 

Article for Autism Acceptance (Yes, my name is spelled wrong, actually it’s only part of my name, so just get over it-I had to.)

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